Month: January 2006

When faced with a difficult situation such as dealing with Pompe, it helps to draw inspiration from people or things around you. It’s something that I’ve been doing in the past. First drawing inspiration from my family (mom, dad, brother and other members) and then from other things. One of the recent ones is the world famous Filipino boxer Manny “Pacman” Pacquiao.

Boxing is a big sport here in the Philippines. It’s one sport that we Filipinos are quite good at. Although most of our boxers are in the lighter categories or classifications. That being said, the whole country was glued to the T.V. set watching the much anticipated bout.

I mean literally the streets were desserted during the fight. The local police even touted the fact that crime was nill during the match.

What inspired me about Manny was the route he had to take in order to become the world champion that he is. He hails from a poor family in “General Santos City”:http://www.wowgeneralsantos.com/. He used to be a laborer before entering boxing. From there his career rose until he became world champion.

I also loved the fact that every time he’d start a fight, he’d go down on his knees and pray to ask God for help.

He’s a gracious winner as evidenced by his actions after the bout. Giving credit where credit is due and giving his respect to Erik Morales. He acknowledged that Morales was a great fighter and that he also had difficulty in beating him.

To the Pacman, congratulations for a great fight, for giving our country something to cheer about in this desperate of times, for uniting our people even for that short while. You make us proud to be Filipino!

The Fight Pompe Campaign is a fund raising and awareness campaign for Pompe Disease. Not to many people know about Pompe and this is my way of spreading the word around.

h2. Fund Raising

Battling Pompe is taxing in mind, body, spirit as well as finances. I’m sure you know how it is to be sick. Medical expenses pile up. What more for people who suffer from a disease such as Pompe, where it is a day to day battle. A lot of paitients such as myself require special medical equipment such as Bi-Pap machines, wheelchairs, medical aide, etc..

I’m actually quite lucky since up to this point, my family and I have done well in dealing with it. I’ve worked most of my adult life in order to help pay for medical expenses. Not because my parents asked me to but simply because I wanted to.

In the Philippines, the country I live in there’s no medical insurance such as the ones found in the U.S. or Europe. So up to this point much of the medical expenses are paid for by my family and/or myself.

The money that will be raised from the campaign will be used in the following things:

h3. Medical Expenses

If you’ve read through my entries here in “Fight Pompe”:http://www.fightpompe.com you know that I’ve started a new treatment. I feel really blessed that I’ve been given the chance to have this opportunity.

However I’ve come to realize that the medicine will not be enough. I need to give this opportunity the best attention it deserves. I need to put in time and effort into getting better. Time, meaning giving enough time for my body to heal with rest. Effort, by putting empahsis in Physical Therapy. These two used to take a back seat to work before this. I think it’s time that it changes.

I plan to take a leave from work for this year. Well not a total leave but I will be cutting back significantly the time I spend at work to give way to Physical Therapy and other things needed to get better. This also means that I will take a significant pay cut. That being said, the medical and therapy expenses doesn’t stop. So with your help I hope to be able to do this.

h3. The Foundation

Together with the doctors that I’m working with, we plan to set up a foundation here in the Philippines. The foundation will aim to help people, especially children with rare disease such as Pompe.

I’m quite lucky to have been born to a middle income family. We’re still lucky that we are able to afford the medical needs that come with dealing with a disease such as Pompe.

A lot of people here aren’t so lucky. In a country wherein majority of the population live below the poverty line, there are a lot of people, especially children who need help. Having a rare disease makes that problem all the more difficult. The foundation will try to help ease the burden. I know that this might be a lofty goal but everything starts with a dream and a lot of hope that we can make a difference.

h3. Donation to the AMDA

The “AMDA”:http://www.amda-pompe.org is the first organization or Pompe patients and family that I joined. They have been doing a lot of good work for the Pompe community. They have funded and continue to fund projects for the Pompe community. From grants for medical research all the way to facilitating patient conferences, the AMDA has done a lot for the Pompe community.

A part of the proceeds from the fund raising will be donated to the AMDA. In a small way the donation will help them continue the good work for the community.

h2. Awareness

Apart from the fund raising and arguably the more important part of the Fight Pompe campaign is creating awareness for Pompe Disease. The more people are made aware of it the more people can help the patients. The first step in dealing with problems is to know what it is. As people get to know more about Pompe, the more they can understand what the patients go through. Just the same for cancer and aids patients. The main difference is that both these disease affect a lot more people than Pompe. Hence the more people know about them.

Still, even if Pompe affects a lesser number of people it doesn’ t mean it’s less important. People also need to find out about it and other rare diseases in hopes that they may be able to help the patients. Who knows maybe someone out there knows how to help Pompe patients better.

h2. How You Can Help

h3. Fight Pompe Merchandise

I’ve started developing some merchandise for Fight Pompe. You can find them at the “Cafe Press Store”:http://www.cafepress.com/fightpompe. You can support the campaign by purchaisng the stuff there. Wear them so that Fight Pompe can gain visibilty. Right now I’m still starting so the merchandise is still limited but do come back from time to time as I continue to add to it.

h3. Spread The Word Around

Share the link to the Fight Pompe web site with your friends and family. If you have a web site or a blog, please add the Fight Pompe link to it. The more people visit this site, the more people will know about Pompe disease. That in itself is a big deal.

h3. Donate

If you’re feeling kind but you don’t want any of the merchandise or you’ve bought some already but still want to help, you can make a donation. I’m still setting up the donation facility but if you’re raring to help out, send me an “email”:juanbkm@gmail.com so I can give you ways to send the money.

From the bottom of my heart, my deepest thanks. In reading this alone you’ve already helped. You’re now aware of the Fight Pompe Campaign. You may or may not be ready yet to help but at least you know about it. You can always come back when you feel you’re ready.

Fight Pompe is my way of contributing to the Pompe community. I started it out as a blog, which was residing at “Blogger”:http://www.blogger.com for a time. I eventually wanted a fully blown web site so I decided to buy the domain and host it at “GoDaddy”:http://www.godaddy.com.

I wanted to create awareness for Pompe Disease. It is a rare disease affecting some 10,000 people in the world (registered cases). There might be more but as of now that is what’s known. Being rare, not too many people are aware of the devastating effects of Pompe not only to the patient but to the family as well.

Since I work with technology, web technology to be exact, I knew that starting the Fight Pompe site is the best way I can help create awareness for Pompe Disease.

I want to share my life with you, how Pompe has affected my life, how I deal with it, and how it has made me who I am today. Despite the devastating effects of Pompe, I have managed to make lemonade out of lemons so to speak. I have learned a lot from my experience and now I want to share it with you. In hopes that it may help you in anyway. Pompe patient or not. I believe that the lessons I’ve learned are universal and can be applied to everyone’s life.

I hope that you visit Fight Pompe often. Ask your friends to come too! The more people know about Pompe, the more people will understand. Hopefully this translates into something good.

It was time again to make the journey to “PGH”:http://www.pgh.gov.ph/v2/ for my bi-monthly infusion. It’s funny how time flies by so fast. It seems like it was only yesterday that I was approved for the Expanded Access Program and now I’m writing about my third infusion.

We checked in on the evening of Jan 16th. As each infusion goes, it seems that things are going smoother, albeit there are still problems with room reservations, etc.. but generally things are getting better. The bad part though, We didn’t get the room we wanted. We got one of the older rooms. The paint was a depressing shade of gray. A stark contrast to the happy orange we got during the previous stay. But that’s about the only bad part. Everything else went well.

The third infusion went smoothly. Uneventful. Although they had to extract blood again from me for some tests, this time it was a one shot deal. They only had to stick a needle in me once. It was the same vein that they used to extract blood and for the actual infusion.

We had to proceed a bit slower this time due to the episode from the previous infusion. But unlike my second infusion, everything went smooth. Apart from the intial blood pressure of around 130/90, the rest of the time my blood pressure was hovering somewhere between 110/70 to 120/80. Quite good. I think the initial high was caused by the needle. I must say I’m scared when it comes to needles.

I won’t elaborate on the rest of hours that passed while the infusion was taking place. Suffice to say that much of the noise only came from the chatter between myself, the doctors and my parents.

During the infusion I wore the prototype of the “Fight Pompe” t-shirt derived from “May Ann’s”:http://frecklefaced29.deviantart.com/ illustration. I just printed it our on a t-shirt transfer paper on my inkjet just to see how it’d look on a shirt. The one I made was a bit too small and I need to adjust the design…. As you can see from the picture…

Funny thing though.. After the infusion the lead doctor told me that if after four hours my vitals were stable and I was feeling good then I could go home. 30 mins before I could go home, the resident I had a crush on walked in… This was the first time I saw her during my whole stay this time… She said that she’d take my vitals one more time before I go home. I absolutely, positively had to hold back everything and concentrate on not laughing or whatever just to keep my vitals stable. After she was done taking my vitals and left the room. Everyone inside was laughing, including me because they knew I had a crush on her. My pulse rate went up by almost 40 beats per minute. My mom was teasing that I might not be able to go home today because my pulse rate went up.. Hahaha.

Suffice to say that the spike in my pulse rate was really due to that and nothing else. A few minutes after the laughing it was back to normal. I was able to go home on time.

Oh well.. What will the fourth infusion bring? I just hope it’s as uneventful as this one.

I’m very happy this morning. Early morning I should say… May Ann Licudine is an artist that was introduced to me by my friend Nikki. I was looking for an artist that could help me create an illustration for Fight Pompe. Something that I could use to pilot my awareness campaign as well as to kick off the fund raising project I want to do.

I believe nothing happens by chance. It’s by God’s grace that I met May Ann. From the moment Nikki told me about her and when I saw her works, I knew I found the right artist.

May Ann also has hearing impairment a form of disability. But true to my belief that when people focus on their “ThisAbility” they can truly shine. May Ann is a very gifted and talented artist. It’s my honor and privilege to have her create the first illustration for Fight Pompe.

Let me tell you a bit about the illustration. I wanted to create an illustration that will depict the fight against the disease called Pompe. At the same time I wanted to show the courage of the people fighting Pompe. I chose an illustration depicting children because a lot of Pompe patients are children. They have truly show tremendous courage in dealing with the disease. I wanted to honor their fight. So that’s how the concept came to be.

I’ll be coming up with some other things in the days to come to kick-off the awareness and fund raising campaign. Check back soon.

One of the great things that has happened as a result of having Pompe is meeting amazing people. I met Maryze years back. She also suffers from Pompe. Anton is her boyfriend.

The great thing about Maryze is that despite having Pompe, she has done a lot. Not just for herself but for other Pompe patients as well. Not to mention other countless people she encounters everyday. She works with the IPA (International Pompe Association) to push for programs for other patients. Despite her having a difficult life, she’s devoted to making the lives of other patients better. She’s done sooo much, for me and for others. For that I will be eternally grateful.

Anton on the other hand is also terrific for another reason. He met Maryze before the effects of Pompe was that apparent. Till now he has stayed with Maryze despite what has happened. I think they share love, in the true sense. Through thick and thin they’ve stayed with each other. Anton’s a great guy. Definitely. They’re both lucky to have each other.

Now in the picture attached to this entry shows Maryze and Anton proposing a toast. They promised to propose a toast when I started my infusions. True to their word that’s what they did.

For the first time in years I found myself wearing shorts last Sunday. I’ve always worn jeans or pants everyday for the past several years. Even if I’m just staying at home. I do so because I don’t like looking at my legs. They’re too skinny.

Ever since I started the enzyme replacement therapy, I feel that I now have a legitimate chance at improving my condition. Hence on that particular Sunday, I told myself, “What the heck!?!? it’s time to wear shorts again”. As much as I hate looking at my legs, I turned it into motivation to try to get them bigger, by eating more and exercising harder.

So from now, on weekends, for so long as there are no guests coming over, I’ll be wearing shorts to remind me of the ongoing battle I have. One day I’ll be able to look at my legs, smile and be happy with how they look…

I had my second infusion last Jan. 3, 2006. I know it happened a week ago but due to the migration to the new web host I didn’t get a chance to write about it. So better late than never…

I checked in at the PGH (Philippine General Hospital) on the eve of Jan 2. We decided to check-in the night before since the hospital informed us that they weren’t sure if I could get a room on Jan 3. In hindsight this was the best thing to do.

We got a nice room. The bathroom was cleaner and newer than the last one we got. The color of the room was also brighter. Unlike the first infusion, the night went quietly. After a dinner of hamburgers, I watched some tv and went to bed, anticipating having to wake up early the next day.

By 6:30 am I was up. My aides and I ordered breakfast from McDonalds. By 7:30 we was good to go. We started the infusion close to 10 am. This time it was done without fanfare. Prior to that though, the doctors drew some blood. Something I really, really (can’t stress it enough) hate. Everytime they draw blood from me, I feel like passing out. Call me chicken but that’s the way I am. I don’ t know if it’s just the sight of blood or something else…

Back to my story… This time the infusion went without much fanfare. When the I.V. was inserted I honestly didn’t know that the infusion had started already. I thought the doctor was still waiting for something and when I asked her when we were going to start, she said that the infusion had been going on for several minutes already.

The hours went by smoothly. Apart from a brief 30 second episode wherein my pulse raced. The doctor brought down the rate of infusion until my pulse stabilized. After that she slowly brought it back up to the maximum rate allowed by the protocol. I don’t think the episode was a result of the medicine. It was probably just a case of nerves… or I was still recoverring from losing blood….

After that, everything went well. To my surprise, the doctor said that If nothing untoward happened after a few hours, I could go home. I was extremely happy to hear that. I was expecting to stay another night. I really wanted to go home since there was nothing much to do at the hospital.

Today, one week after the second infusion everything is looking good. I’m not experiencing any side effects, no itchiness, numbing or anything like that. I’m praying that the next infusions will also remain trouble free.

Oh, I gained half a kilo since the first infusion. I don’ t know if that’s because of the enzyme or the holidays…. Maybe both…

Fight Pompe finally moved to it’s own domain. Like any other move, it will take some time for things to look how I want it to. So be sure to check in often as the next few days will bring more changes. For now please bear with me. I know the site doesn’t look as good as the previous one but that’s temporary. I’m currently building the new template.

A new home for a new year. I do hope that this change brings about good things. Till next time.

Fight Pompe!

About Fight Pompe

Welcome to my corner of the virtual world. I mainly put up this blog to chronicle my fight against Pompe Disease. A rare genetic disorder. Apart from that I wanted to write about things I've learned going through my experience, stuff I love which includes design and a bunch of other stuff. I hope you enjoy reading my entries. Check out my about page for more details.